Compared to their typically developing peers, adolescents, and emerging adults with special healthcare needs (AEA-SHCN) disproportionately experience healthcare transition (HCT) disparities and poor access to adult care. Theoretical models that describe how access gaps develop and strategies to address unmet HCT needs are not well understood. While HCT researchers describe both system and patient healthcare barriers, a comprehensive approach that discovers how these factors interact and interfere remains misunderstood. An integrative review (IR) was conducted to understand the multiplicity of these factors. An intersectional theory (IT) provided further clarity on how key findings influence patient HCT experiences. Several themes were found to intersect and thus increase the HCT complexity, particularly for patients with social disadvantages. Communication gaps, mismatched goals/expectations, and poorly defined roles were common themes. Poor health equity, disparities in access, and inadequate HCT support intersected with poor patient HCT experiences, while youth with stigma-related diseases were most at-risk for poor provider-relationships. The thematic synthesis provided granularity to these experiences with characterizations as fear, loss, and uncertainty with access change. Social change implications underscore the need to reframe poor patient HCT experiences as potential opportunities for health policy advocates and clinicians to address unmet HCT needs.

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Objective: The purpose of the current study was improving the measurement precision of the Transition Readiness Assessment Questionnaire (TRAQ 5.0–20 item) in order to gain better decimation of transition readiness skills across the 5 Stages of Change–from Precontemplation to Mastery. Methods: In stage 1, starting with the TRAQ 5.0 20-item, 5 domain subscale questionnaire, we eliminated the five lowest discriminating items using Item response theory (IRT) in MPlus v7.4,which eliminated the domain subscale Managing Daily Activities, and we e added 15 more difficult and better discriminating items. We added items to both to the remaining 4 domain subscales and created a new domain subscale entitled Future Planning. The revised 30-item TRAQ was piloted among 386 youth between 16 and 24 years old (mean = 20 years; 54% female; 87% White). Results: After examining the model fit, discrimination and difficulty coefficients, and modification indices, we eliminated 10 items and the new Future Planning domain subscale we eliminated. The resulting questionnaire has 4 domain subscales and 20 items. It exhibited good to excellent fit to the data, χ2(164) = 887.239, p <.001, CFI = 0.943, TLI = 0.93, RMSEA = 0.0942 (90% CI: 0.090, 0.114), WRMR = 1.111. All items have acceptable discrimination coefficients. Each of the 4 domain subscales have improved reliability as compared with the original TRAQ 5.0 20 item scale. Conclusions: The revised 20-itemTRAQ 6.0 has 4 domains subscales; Managing medications, keeping appointment, tracking health issues, and Talking with providers and has good construct validity as demonstrated by model fit. By adding more difficult items to the 4 resulting domain subscales, we have demonstrated improved item discrimination and difficulty, and therefore can better measure acquisition of transition readiness skills across the five stages of change from pre-contemplation to contemplation to initiation to action and finally to mastery.

As youth with disabilities age and transition to adulthood, they will often need to learn how to manage their healthcare. Siblings are members of the family who can provide support to their sibling with a disability, but their roles during transition have not been well described in the literature. Typically developing (TD) siblings identified that they require information and resources in their roles. The overall objectives of the research studies in this doctoral dissertation are: 1) to synthesize existing resources and programs to support TD siblings of individuals with a disability; and 2) to develop a deeper understanding about the experiences of TD siblings. The findings from these studies are summarized in six scholarly manuscripts prepared for peer review and publication. All studies were conducted in partnership with siblings with lived experiences. Results from the review and qualitative document analysis of online resources to support TD siblings (Chapter 2) identified that limited resources are available to support TD siblings with healthcare management of their sibling with a disability. The scoping review (with the protocol described in Chapter 3 and results presented in Chapter 4) identified that programs for TD siblings are focused on knowledge development and skill acquisition for the TD siblings themselves or on empowerment by training TD siblings in skills that they can apply with their sibling with a disability. In addition to synthesizing existing knowledge, the qualitative study provided an in-depth understanding of the experiences of TD siblings (with the protocol described in Chapter 5) in two distinct areas: their roles and responsibilities (Chapter 6) and the influence of their sibling and family relationships on their identity formation during developmental stages (Chapter 7). Overall findings from this dissertation suggest areas for future directions, including knowledge transfer to share synthesized resources with target audiences, co-creation of resources to support siblings in their roles, and enhancement of programs to involve siblings and the whole family. / Dissertation / Doctor of Philosophy (PhD) / As youth with a disability transition to adulthood, many will assume greater responsibility for their own health management, activities often supported by family members, including siblings. Little information is available about the roles that siblings have to their sibling with a disability in this process. Siblings have mentioned that they need information and resources for their roles. The purpose of this work is to summarize resources and programs in Canada and internationally for siblings, as well as better understand the experiences of siblings of an individual with a disability. The information from this work can be helpful by sharing the summary of resources with siblings and families, create new resources to support siblings of an individual with a disability, and build on programs that allow for siblings and the whole family to participate.

Background: A growing population of youth with medical complexity (YMC) are surviving into adulthood and being forced to transition from pediatric to adult health care. YMC and their families face significant challenges during this transition, putting them at risk for service fragmentation, inadequate care, and negative health outcomes. Existing interventions to support transition continue to have limited benefits for this group, demonstrating a clear need for tailored supports, informed by the perspectives of YMC and their families. Currently, these families’ transition experiences are poorly understood in the Canadian context. Thus, the aim of this dissertation was to holistically examine the experiences of families of YMC with the transition to adult care in Ontario. Methods: This sandwich thesis consists of: 1) a meta-ethnography synthesizing qualitative literature about the experiences of YMC and their families during the transition to adulthood; and 2) a patient-oriented qualitative case study exploring: i) how families of YMC adapt to the transition to adult care; ii) the influence of contextual factors; and iii) family recommendations for support. Findings: Transition impacts nearly all aspects of the youth’s and family’s lives. Families encounter numerous challenges in their pursuit of a good future and they “survive” by advocating, making sacrifices, and persisting despite inequities. Furthermore, families’ experiences are shaped by the complex interplay of personal and environmental factors. Conclusion: Implications for nursing practice, health care provider education, and health policy focus on: supporting nurses to provide instrumental and psychological support to families; building capacity in primary care (e.g., through nurse-led models of care); training health professionals on complex care management; and advocating for system-wide strategies to improve health care transition. Future research should prioritize the co-design and evaluation of interventions to address families’ information and emotional needs and training initiatives to facilitate the implementation of recommendations into practice. / Thesis / Doctor of Philosophy (PhD) / Youth with medical complexity have serious illness and intensive care needs. Recent advances in technology have led to more of these youth living into adulthood and moving to adult health care. The transition to adult care puts their health at risk and is highly stressful for their families. Currently, little is known about how these families cope with this transition and what help they need. This thesis aims to address these gaps by reviewing existing research and interviewing youth and families about their experiences. Findings show that the transition to adult care greatly affects many parts of the youth’s and family’s lives. Families cope with these changes by advocating, making sacrifices, and persisting in the face of inequities. Study findings can help guide nurses, other health care providers, and policy makers to better support these youth and families in their transition to adult care.